Hi all i am so frustrated with the system at the moment i really hope you can help. I am under two neurologists who have basically admitted i am out of their level of expertise and one i saw 6 wks ago (who i must add was a neuro ophalmologist!!)he would refer me to a specialist who deals with the auto immune problems that affects the eyes, however i have today found out he hasnt done so and hes just asked to see me again in 4 months time ??? My GP has today said the neurologist has put my eye problems down to 'unexplained neurological disorder' and told me that neurological problems are untreatable, i am warfarinised to the max and basically there is no hope if im still having stroke like episodes. I am gutted and heartbroke at the moment and feel like giving up. My physiotherapist has confirmed muscle wastage and signifacant left side weakness and advised me to be reviewed by a neurologist however the two i am under will be no good to me i dont think. Does anyone know of a neurologist who specialises in the neurological manifestations of APS in London who i can pay to see if needed or a name i can pass on to my GP to get referred to. I have exhausted Birmingham - the Lupus excellence ctr there just referred me to heamotology who dont think it is vascular related and left me to be treated by neurology who dont know enough about the condition so im lost. My eyes are fine and healthy - it is the brain not supplying the eyes that is the problem, and now my muscle spasms have now turned in to twitches and judders. I dont know whether to risk another appointment wasting my time to see an immuno opthalmologist who will tell me my eyes are fine from their point of view or just to giveit a miss and pay privately if needed to see someone who specialises in the neurological side of it and see if that same problem that is affecting the eyes are affecting the rest of me sorry its a long one xxxx
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